Hasan!

Hasan and I came to know each other through an FB Islamic group around 6 to 7 years back.  

He was around 24 years old kid that time. But his maturity, sharp mind, knowledge in Islam, and his way of discussions and arguments in various subjects used to beat his age. 

Apart from all those skills, another one skill of him on which I used to get impressed is.. his humorous sense and his jokes timing.  Believe me... I will rate him #1 in that skill among entire 1000+ members of that group.   

Only after a year or so... I came to know about a shocking truth about him. 

Yes.. Hasan was suffering from Muscular Dystrophy (MD) disease. 

Br. Hasan in his recent picture.

What is Muscular Dystrophy disease..?

Muscular dystrophy (MD) is a group of muscle diseases that result in increasing weakening and breakdown of skeletal muscles over time. Many people will eventually become unable to walk and should depend on wheelchairs. There is currently no way to prevent or reverse this disease.  Medication, therapy, breathing aids or surgery may help maintain function, but lifespan is often shortened.

Yes.. He can't walk a bit, he can only crawl by his hands and was in need of a wheelchair to move otherwise. 

So he doesn’t have any life outside his house and his entire world was a smartphone, that Islamic FB group and members in that group. That’s all! 

If you are a Tamil, then you will remember the Tamil actor Napoleon. His son also has MD and Mr. Napoleon is running a Myopathy treatment center in Tamil Nadu for MD affected kids after his experience of not finding treatment centers for treating such kids with enough facilities.   

Hasan was very active and healthy kid like many other kids till his age of 7.  Check the picture below.

Active, healthy and energetic Hasan at his young age with his elder brother (left in the left picture, right in the right picture)

After that age only, the symptoms of MD started appearing one by one to him and he was slowly losing the ability to walk and completely stopped walking one day. 

When I came to know about such news about that brilliant kid... I was so shocked like many others in that group.

Like many others in that group, I also have visited him once and also met him in some marriage functions a couple of times.

Whenever I saw him, I used to become saddened by seeing the difficulties he faces every day to run his life.  Believe me... he needs at least 5 minutes to move from one wall to another wall of a room by using his hands.  It is not a crawling kind of what normal crawling kids do. 

One of astonishing news about him was.. in spite of all the difficulties he faces, he never misses a single prayer of a day.  

Seems.. the God doesn't want him to suffer any more days...

Yes, He took his soul two weeks back (8th Nov 2018)! (Inna lillahi wa inna ilayhi raji'un)

Why him / her / us ?

Let's give a break to Hasan’s story and see someone else’ now.

Around a year back, our area mosque Imam (priest) and I were trying to arrange a Madarasa for Quaran teaching for Muslim kids living around our area at our house.  For that effort, I and my wife were calling the parents of kids those who were previously attending Madarasa at our house when it was running before we came back from the Gulf. 

When one of those parents, who is a mother of a 10-year-old girl student, came to our house for some other purposes, I informed her about the new Madarasa arrangements and asked her to send her daughter. 

But she refused. 

The reason what she said was that.. her daughter can’t walk now!

My mom, wife and myself, who were at my house that time, were so shocked to hear that and when we asked her the reason she said.. her daughter is also suffering from Muscular Dystrophy.  All the changes.. that is an active, school and madarasa going girl to an inactive and having a condition of unable to walk girl.. are happened in a span of just two to three years. 

Then when I asked her about the treatments they are giving to her daughter.. she told about some Ayurvedic treatments.  

Then to motivate her when I told her “Whatever the difficulties your daughter and your family are going through now will be definitely compensated in here-after life in multiple times.. So don’t worry..“

She replied to me with tears in her eyes...

“That will only come in next life.. But why should we feel pains and face these difficulties till that time in this life..?”          

I couldn’t find words to answer to that question. 

So.. What can we do If you want to do something..?

1. We can help financially, physically and whatever the way possible to those MD affected people who are not affordable for treatments.


2. Spread the word & awareness about this disease and its effects in whatever the channels possible. If you see any of your known kids or youngsters started falling down while walking suddenly or walking differently.. then watch out.. they/you may seek medical advice. See here for more symptoms.    


3. When you spread the word, it is not only going to help your family and friends but will also help to reach the decision makers in govts, international healthcare & welfare organizations and researchers.. So that necessary steps & researches can be taken to find solutions and cure this disease.  Not only just spreading the word, but we also have to advocate for solutions with those decision makers whenever we get chances.  


4. Do you know why Mr.Napoleon who was once a successful actor, who acted in more than 100 movies and a successful politician who had served as an MLA, MP and a Union Minister, has removed himself from the limelight and settled down and living in the US for the past six years..?  


He compromised all his such fame filled careers only for his son.   


The reason he says.. his Muscular Dystrophy affected son could not lead a normal life in India.. that means India doesn’t have enough facilities for such people to lead a normal life, but they get that in US.  


This is what he says..


“...In India, other than at the malls, we do not have the facilities that a person like him (ie. his son) needs to lead the life like a normal individual.  For example, he uses a battery-powered wheelchair, and there are no separate pathways for him to commute on the roads.  Here, in the US, he is studying animation in college and can do his tasks without much hindrance.." 


So what are we going to do about this issue..? Are we going tell the MD affected kids and youngsters living in developing countries like India not to get out of their homes and treatment centers and not to lead the lives like normal people..?  Or are we going to demand the lawmakers of those countries to bring necessary plans for well being of their MD affected citizens..?


5. I found no single-stop websites in India either in English or in Tamil where all resources related to MD such as what, why, how, and where details about the disease and available treatment centers can be found. But in US and UK.. there are some excellent community of MD affected people's families formed and government-funded websites for such details. See the more resources section below.  So those who want to volunteer can also help in building such a website along with a team of other volunteers. 

Few words to Br. Hasan..

What were you thinking during your last moments Br. Hasan..?  

Were you asking “Why me..?” or accepting it as God’s wish and peacefully preparing for your last journey..?

Were you thinking the world or your country failed to provide you the solution or you were thanking those who were helping you so far..?

Irrespective of whatever your thoughts were in that moment.. one thing I can say for sure..

If God exists (I’m sure he exists).. whatever the pains and difficulties you have gone through here will be surely compensated and rewarded in multiple times in the next life for you..God willing. 

May God Almighty do that for him, help the world to find the cure for MD and cure all those affected by MD and all such kinds soon..!!!

Aameen!

More Resources

1. Another most inspiring MD affected man who passed away recently. 
2. Muscular Dystrophy Association in US.
3. Muscular Dystrophy UK
4. Actor Napolean's emotional interview on why he started Myopathy treatment center (Tamil).